[canuckmiss56]

Hello all, so glad i found this place , I feel so confused and alone sometimes

I am a 56 year old woman who had been in generally good health for ten years except for smoking, I quit the day after my symptoms started.
I suddenly developed vertical double vision in November 2014, first night it lasted about three hours and i went to Emerg. It resolved by morning. Cat scan was ordered, but the double vision became a nightly ordeal. The cat scan with contrast was clear. I also began to feel tired and weak during my normal night shift and not myself. I was afraid they would take my drivers license away so i didn't go back to the doc as quickly as i should have. Within three weeks the DV was becoming worse and i had a spell at work where my legs felt wobbly and i was getting pains in my arms and chest when i exerted myself so i went back to emerg . They did tests to ensure i had not had a heart attack and kept me over night. An MRI was ordered and a few days later my double vision became an all day event so I went on sick leave and that has continued to this day. I also began to have right sided paresthesia in my arm leg and side of face. Sometimes this was severe. My head would feel like it was under pressure. The MRI came back clear except for fluid in mastoids. I was also scheduled for a cardio work up- doppler, echo and stress test and those results were ok. Opthomologist thought it could be a fourth nerve palsy. I was referred to a local neuro but did not see him till February 2,it seemed after i had the clear MRI no one was in too big of a hurry. The neuro tested my double vision and did a standard neuro test and nerve conduction on my right arm only. He wants me tested for ocular myasthenia and I am going to a Neuromuscular clinic , the appointment is not till march 25. He did not do blood work or order a EMG. He said ocular myasthenia was not myasthenia gravis and did not seem too concerned about my other symptoms as i presented normally in his office. Meanwhile i still have the paresthesia and aching in right leg and arm plus when i wake up in the morning my right side feels asleep. At night i get a lot of random twitching in my arms legs and shoulders, even feet, i forgot to tell the Neuro about that . I tire very easily and a short walk to the grocery store can do me in. I often feel stiff in the small of my back and it radiates down my legs. My double vision is still an all day event except for about 15 minutes first thing in the morning and then it devolves quickly. The tingly feeling in my right arm has spread to my chest and down my back. The back of my throat feels a little stiff sometimes but i have no issues speaking or eating. I phoned the neuro office to ask for another consult to discuss these issues but was told by the receptionist that i would need another referral from my doctor for ohip reasons. My own family doc said all these things would be addressed at my appointment at the NM clinic hopefully he is right . Incidentally the orthotic specialist the opthamologist sent me too said I was not presenting like fourth nerve palsy,he was not sure what was going on with my eyes and didn't think prisms would help at this time so I am still wearing a patch. I asked if there is anything else they might consider checking me for besides OM and he wrote down LEMS and said i could look it up. Something else to worry about ! The neuromuscular clinic i have been referred to is considered the top in the province but some of my symptoms do not seem like MG. About 10 years ago i had some of the same symptoms , i had the right side paresthesia, felt dizzy, i had bad headaches at that time but no double vision. All my tests were clear and i slowly got better over the span of about 6 months. I know my docs at that time thought it was all in my head. Since then I have been pretty healthy and had impeccable attendance at work. To be back in this situation is a nightmare. It sometimes feels like gremlins have invaded my body. Any insights or suggestions would be appreciated. This is going to be a long month til my appointment I find it very difficult to talk to doctors likely because of my bad experience from years ago and i want to make sure i make the most of this appointment

[Lara]

Hello canuckmiss,

Welcome to the NeuroTalk Support Groups.

I'm sorry you're feeling so alone, but I'm sure the members here should be able to give you information and support that you need right now as you await your appointment.

I would suggest posting over on the
Myasthenia Gravis Forum

take care.

[EnglishDave]

Hi Canuckmiss,
Double vision was my first post here, too, but mine is permanent and unstable, caused by a lesion in the occipital region of my brain. I understand how debilitating this is, I have lost my ability to drive completely - prisms and patches don't work.
What I don't understand is why you haven't had the blood tests for MG. They were the first tests done when I presented, followed immediately by MRI. I do not know about your other symptoms, I have had so many neck, head and neuro problems it's impossible to separate new ones out, but the MG Forum Lara directed you to will help.
What I do know is how a condition that affects one's eyesight can impact every other part of life in a very negative way. If you ever need to talk about things, I - or others - are always here.
As for not forgetting things at your Doctor/Neuro appts, make a list of everything you want to ask on your PC, refine it, print out 2 copies and hand one to the Doctor when you go in, reading the other one/taking notes yourself if you like. That way your Doctor knows exactly what you want to know, you don't have to worry about forgetting anything and you will get your questions answered. Don't feel embarrassed or foolish doing it - it also saves time.

Dave.

[Kitt]

Welcome canuckmiss56.

[Darlene]

canuckmiss,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[canuckmiss56]

Originally Posted by EnglishDave

Hi Canuckmiss,
Double vision was my first post here, too, but mine is permanent and unstable, caused by a lesion in the occipital region of my brain. I understand how debilitating this is, I have lost my ability to drive completely - prisms and patches don't work.
What I don't understand is why you haven't had the blood tests for MG. They were the first tests done when I presented, followed immediately by MRI. I do not know about your other symptoms, I have had so many neck, head and neuro problems it's impossible to separate new ones out, but the MG Forum Lara directed you to will help.
What I do know is how a condition that affects one's eyesight can impact every other part of life in a very negative way. If you ever need to talk about things, I - or others - are always here.
As for not forgetting things at your Doctor/Neuro appts, make a list of everything you want to ask on your PC, refine it, print out 2 copies and hand one to the Doctor when you go in, reading the other one/taking notes yourself if you like. That way your Doctor knows exactly what you want to know, you don't have to worry about forgetting anything and you will get your questions answered. Don't feel embarrassed or foolish doing it - it also saves time.

Dave.

Thanks Dave for your reply. I live in a small town and when i first got sick they thought it was a mini stroke , the opthomologist i visited has no experience with MG and was surprised when i told him what the neurologist said, i suppose because my eyelid was not involved and my DV was an all day event. I am not sure why the neuro did not order the blood test for MG I too found it puzzling after reading up on this condition. I am sorry to hear about your situation, i understand how vision issues change your whole life. Thank you for the tips on dealing with doctor appts. I get so anxious sometimes my mind goes blank when i finally get in front of the doctor.
Thank you again

[canuckmiss56]

Originally Posted by Lara

Hello canuckmiss,

Welcome to the NeuroTalk Support Groups.

I'm sorry you're feeling so alone, but I'm sure the members here should be able to give you information and support that you need right now as you await your appointment.

I would suggest posting over on the Myasthenia Gravis forum


take care.

Thank you for the warm welcome and will post on MG forum
Regards Canuckmiss

[canuckmiss56]

Thank you for the warm welcome, I appreciate the supportive atmosphere here.

Regards Canuckmiss

[Snoopy]

Hello canuckmiss56 and welcome to NeuroTalk.

I have double vision and I had the blood test for MG, the blood test came back negative. My Neurologist will not rule out MG based on the blood test simply because ocular MG will not always show up for the blood work.

I also have a long standing diagnosis of Multiple Sclerosis (MS) which will also cause double vision. My MRI does not currently indicate MS as the cause. So for right now my current disease, Multiple Sclerosis, is the most likely cause but MG has not been taken off the table.

Just thought I would share how complicated finding answers can be sometimes

Take care.

[canuckmiss56]

Originally Posted by Snoopy

Hello canuckmiss56 and welcome to NeuroTalk.

I have double vision and I had the blood test for MG, the blood test came back negative. My Neurologist will not rule out MG based on the blood test simply because ocular MG will not always show up for the blood work.

I also have a long standing diagnosis of Multiple Sclerosis (MS) which will also cause double vision. My MRI does not currently indicate MS as the cause. So for right now my current disease, Multiple Sclerosis, is the most likely cause but MG has not been taken off the table.

Just thought I would share how complicated finding answers can be sometimes

Take care.

Thank you for your input, of course MS crossed my mind but it hasn't been discussed by my doctors, i suppose because of my clear MRI I only had an MRI of my head, the spinal cord has never been imaged, i have wondered if that would be helpful.
Thank you
Edith